Oh, We are in PA. We travel now to see the ear and sinus specialist
to the UVa in VA. They have an excellant sinus guy there, who
referred us to Andy Lane or somebody else one at the UPENN and the
other at Hopkins. I guess our sinus problems have entered the big
leagues. Pretty funny, cause a couple months ago it
was "irrelevant".Was the dr. Dr. Tichenor? I have heard of him too.
Kim--- In helpsinuses@yahoogroups.com, heather <heaven1975@y...>
wrote:
>
> hi.  i'm sorry to hear your son is still having so many sinus
related problems. does the CT show structural problems, or
inflamation problems?  if its structural, fess is likely an option. 
fortunately, its not like it was even five years ago when i had it
done the first time. 
> 
> i just wanted to offer what has helped me thus far (and i realize
its early in my "sick" season, but its already mid october and
i'm "healthy" still - KNOCK ON WOOD). maybe you can ask the dr about
some of this.
> 
> anyway, i've been using the sinu-neb with bethlamethasone or
something like that twice a day. (its a nebulized form of nasal
steroids).  i also use astelin (allergy) and nasacort (steroid) for
my sinuses. on top of that, i take biaxin daily, which in long term
use helps to reduce the swelling and inflamation in the sinus
cavities. last year, i got a pnemovax, which is also proven to help
fight some strains of sinus infections. on top of all that, i am on
the asthma cocktail as i call it, including singulair, which is
contraversial, but supposedly it helps the sinuses/allergies. i'm
also on xolair, which is for severe asthma/allergies, but is in
testing for sinus relief due to allergies.
> 
> early on in the sinus disease chapter of my life (about 5 years
ago) every CT would be worse than the one before it. it wasn't until
we started all the sinus meds (specifically the biaxin, pnemovax and
the sinuneb) that we made any progress.
> 
> where are you located? i'm on long island (you've probably
mentioned, but my head is not holding any info).  my asthma dr wanted
me to see a dr here on long island, but he was an hour away and
didn't accept my insurance, so i couldn't go. if you are close to
long island, i can give you his name. he is apparently "the man" when
it comes to sinus disease.
>
> although i'm sure the dr told you this, but while your son is on
the steroids, please be sure to increase his potassium
(bananas/oranges and such) as well as his calcium.  as a long time
on/off steroid person (25 years +, and i'm only 30) its a huge
concern of my dr.
> 
> hope he is feeling better!!
>
> heather
>
> tjajnk <kimannnguyen@m...> wrote:
> Thanks, Connie,
> So the sinus surgery didn't really help, due to the type of inus
> problems your son has. How long and how many tests, years did it
take
> the docs to figure it out?
>
> I'm sorry to hear your son has been thru so much already, but he
does
> sound resiliant. Don't know what our future holds, but have a
> creeping suspicioun you are right about the fess.
>
> Where in the country did you have that done? Thru all our turmoils
> with the old ent I did do alot of research, and saw that for this
> surgery one needs to have a surgeon with alot alot of experiences
> with this. I have found a good one down at the UVa. It's just too
bad
> one has to travel so far to get competent medical care, but after
all
> we've been thru I would travel across the world to avoid any more
> quacks.
>
> Take car, I hope your son is better soon, and let you know what the
> sinus dr. has in mind.
> Kim--- In helpsinuses@yahoogroups.com, "Connie" <mclennans@s...>
> wrote:
> >
> > --- In helpsinuses@yahoogroups.com, "tjajnk" <kimannnguyen@m...>
> wrote:
> > >
> >  Has your son had the sinus surgery?  The wierd thing
> > > is my son is not very symptomatic at this point , yet the ct
> looked
> > > really bad. I guess thank goodness we have a competent dr. on
the
> > > case now, or we would have never known.
> > >
> > > How are the teenage years, BTW? I heard it can be a wild ride
for
> > > parents, just when I thought life wouldn't get much more
> interesting?
> >
> > He has had sinus surgery twice, at ages 11 and almost-13. Because
> of
> > the TYPE of sinusitis he has -- an autoimmune/inflammatory thing
> > similar to asthma -- neither provided long term relief, and
surgery
> is
> > no longer considered an option.  He is a great kid who has
survived
> a
> > lot -- 5 months in the hospital and 5 major abdominal surgeries
> (from
> > ages 8-10), including a total colectomy  -- in relatively good
> humor.
> > So this is by far the lesser of the two main health problems he
has
> > had. He is bright and has always had a relatively easy
disposition -
> -
> > though at 14, chronic illness is getting old and sometimes makes
> him a
> > little cranky. I am definitely glad he didn't go through the
worst
> of
> > it at THIS age!
> >
>
>
>
>
>
>
> Chronic Sinusitis Support Group
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